Re: HELP ANYONE!!!!- to Leslie

From: Jo Eslick (
Sat Jan 5 21:24:32 2002

Hello Leslie

Welcome to the board, I hope we can offer you the comfort, support and friendship you need to help you cope with your pain and your fear.

The hardest thing for all of us is to accept that adhesions can cause such an upheaval in our lives in both the physical sense and our day to day interaction with society.  When we are in pain, the ripples of disruption in our lives extend forever outwards to our spouses, partners, children, parents, work friends & colleagues and all the way to the outer reach of our social circle.  What makes it even harder is that in a sense it is an invisible disease and therefore it is difficult for those around us to fully understand how it actually effects us physically and mentally.

I was sorry to read that adhesions have already caused so much trauma in your life and that drastic surgery was required to help you survive.  While I am not a medical person, I have come to believe through personal experience and through talking to the many people here on the adhesions board that surgery isn't a real answer to our problems at this stage.  Most of us have found that each subsequent surgery has just added to our pain and medical complications and so really, we are better off to avoid it as much as possible.

While there has been a few who have had some reasonable results with adhesions barriers, personally I don't think that as yet this is the answer to our problems.  I am not sure if you have any knowledge about these barriers, but the principle of the idea is to surround a threatened organ (from adhesions as a result of surgery) with some kind of barrier.  There are a few different one's being used in various countries around the world and take the form of a gel, a spray gel or a substance that breaks down after a week or so and is reabsorbed into the body.  It is known that adhesions begin to form almost immediately after surgery has finished and continue to grow from there.  By placing the barrier around the organs associated with surgery, it is hoped that any adhesions trying to form cannot, because of the barrier.  If adhesions haven't been able to find a tethering point within a week or so, then they may not form at all.

Patients who have had some sort of barrier used have been told by their doctor after surgery at a later date that there are little to no new adhesions formed WITHIN THE AREA that the barrier was used.  Other patients however have been told that the barrier was ineffective and just as many new adhesions had formed as previously.

Which really leaves us at this point with very few options other to avoid surgery wherever possible.  It is not an easy thing to accept that there is nothing that we can claim as a "cure" for our adhesions related problems at this time, but it is something we need to accept and then find ways to cope as best we can until such time as when a cure is found. (remember these are my personal conclusions)

My advice to you Leslie is to firstly become familiar with all the information on adhesions available at this time.  Read all the stories on the adhesions quilt and then add your own.  Next you need to find a good doctor who is sympathetic to your predicament and who is willing to work with you to give you the best quality of life that is possible.  This might mean a combination of pain medications and diversional therapies such as meditation, relaxation, visualisation and breathing exercises.  Read the messages on the board and ask questions no matter how silly or stupid you think it might be.  I have a personal saying that I live by - "A stupid question is one that isn't asked."  So feel free to ask us as many questions as you like, and we will do our best to answer them for you, or help point you in the right direction to find it for yourself.

I try to stay focused on what is good in my life, my children, my husband and extended family (including their warts & all ), it is also appreciating the beauty that surrounds you, a simple flower, the shape of a tree, the colour of the sky.  Use all of your senses to help you find all that is good.

I hope that this helps you in some way, I haven't experienced an NG tube myself, but I have lived through many other traumatic, uncomfortable and undignified tests, scans, surgeries and treatments and so I understand that you would want to avoid NG tubes in the future..... but perhaps you could look at it this way, at least it isn't another surgery which is encouraging new and nasty adhesions to form in your body.

Please feel free to email me privately anytime, either at or I would love to help.

Love & warm gentle hugs

Jo (Australia)

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